July 25, 2013-Volume 89: Three Years Post Accident: Getting Back to Center Without Central Vision

The Adventures of the BLOVI Girl-Volume 89: Three Years Post Accident: Getting Back to Center Without Central Vision

Last year, on the two year anniversary of my accident, I ended the blog to write a book. I wrote that book---38 chapters and 315 pages.  Now, at three years after the accident, I am in the final stages of editing, ready for it to be placed out in the world. In my writing I purged, processed and pontificated about the process I went through to adapt. And now I have come out the other side of transition. I am what I am, it is what it is. I took myself out of the game to dance on the periphery so that I could transition, adapt and grow. And to have the time and space to do the work I was doing emotionally and creatively. It is time for me to get back in the game, to share, to reconnect, to move back into the center of the action.

Things are in what I call the steady state of life. There has been a settling down. Life lived in the moment. Life that has had challenges. The learning curve for adapting to being visually impaired has flattened out. Like when you come out of the drop on a roller coaster and it’s just speed on the flats with a few turns. It’s not like I have figured everything out. But I have worked through and out the big things and tend to not sweat the small ones.

The biggest change has been in the addition of Polly Persephone the pink Ped E Cab. The ability to travel in a 5 or so mile radius around our home has brought freedom. And it brought back a feeling of normalcy and of independence we did not have before. It can't go everywhere and I find myself choosing activities based on locations. And we are still missing out on bigger things like vacations and weekend outings. But we will get there someday, hopefully soon.

Now three years later many new people I meet have no clue I am visually impaired. They don’t know about the accident. And it feels good to not have to talk about it. So most of the time, I don’t. And some people who have known me even tend to forget. That is because I am doing a fantastic job passing as sighted. My visual acuity is and will remain the same. But my reorganizing brain, routines, creative problems solving and ability to fake sighted continues to expand. And expand into spaces and places where I even forget once in a while I am visually impaired. And now, I just think I am a person who sees differently. How I see is just how I see. It is something I will never be able to convey to others. But it is no longer foreign to me.

So this is my life. It is not pretty and it is not much different than anyone else’s because we all have challenges. I still have mostly good days and some really bad ones. But almost none of the bad days have anything to do with my inability to see well. The high points and the low points are there because of the other things life throws in my path. And usually they are big enough so I can see them coming.

I have grown emotionally and I continue to work on myself and my physical, mental and spiritual health. I am smoothing out the last of the rougher edges and working on those last pieces of what I need to do to feel good most of the time. Because I am healthy I now, and this is a change, have a very limited tolerance for drama, chaos and the shenanigans of the emotionally unstable, manipulative or otherwise crazy set. My boundaries are tight and strong and I do not tolerate behaviors that cross those boundaries.  I place no energy in black holes. The black holes are people or situations that will never change. I surround myself with others who are, for the most part, healthy and positive. I am always willing to support those in times of crisis. I still do that well.

I am me, just me. And sometimes I am reminded that this thing happened and that once I was sighted. But I am beginning to forget that life. Or maybe, I am moving on from it and placing it where it belongs---part of a past that is over and done. I am beginning to be surer of my future and see it coming into focus. A partner, a book, maybe another book, a move, a next phase of a life that has been unfolding. And I am ready, for whatever happens.

That next phase is moving back to playing in the game of life. This means the rebranding of myself and my business, the selling and marketing of my book, the polishing and production of my songs, and maybe the publishing of my poetry. Even more so it means the sharing of the lessons learned on this magnificent journey that has been at times my totally f-upped life. I am ready to tell my story and share my gifts in the form of both word and deed. Whatever opportunities I can get to fully carry out my mission, which has been and will be, to leave people and places better than when I found them. I have been baking the cake and letting it cool. Now I am ready to slice it up and serve it. And I can promise, it will be good.

Keep Moving Forward,

Beth (BLOVI) Medlock

July 18, 2013-Volume 88: Chapter Two of Enlightened

The Adventures of the Blind/Low Vision/Visually Impaired (BLOVI) Girl-Volume 88: Enlightened Chapter Two

In May I put the first chapter of my book in a blog and many said they expected the second chapter to be the next blog. Well, here is that chapter---the chapter about my time in the hospital post-accident. It is dark, because my vision was dark. Next week marks the third anniversary of the accident and my blog will be a reflection of what I have learned in three years of visual impairment.  

Chapter Two: My Time in Purgatory (or the Hospital)

I got moved in the middle of the night onto a floor of the hospital known as a general floor that was not at all general. I was on a floor where they put people who are waiting to be placed in nursing homes but have nowhere to go.

Some kind of purgatory.

I was in the middle of a span of rooms with people in various states of dementia and the other ailments that mark the path of the slow decay toward death. The forgotten, those without visitors. In the night I heard moaning and sometimes crying. It did not make for cheerful surroundings or a motivated nursing staff.

And then there was me, freak-accident-girl, my room a scene of chaos with various family members and doctors checking in and out at all times of the day and night.

Lights in the eyes, drops in the eyes, bags of steroids hung and drained, and noise. There was so much noise that I was suddenly hypersensitive to in my blindness. Sleep was impossible and I wanted to sleep because I wanted to dream and to then wake up and realize that this was all some kind of strange nightmare. But it was oh, so real.

For 5 days I was stuck on that waiting-to-die floor, which I began thinking was kind of like the isle of misfit toys from Rudolph the Red Nose Reindeer. We are broken and nobody wants to play with us.

For the first 72 hours, they pumped me with steroids so I was feeling fine, eating and somehow managing my family and my daughter’s life and schedule lying in a reclined position in a hospital bed. I am still not sure how I managed all that, but I did: making sure my daughter was being taken and picked up from camp, cared for and fed, and put to bed in her usual routine.

And I did it using voice commands to my family and voice commands to my Blackberry, which I could no longer see. I knew, in theory, that the phone had voice commands. And I also learned that the voice commands work like 30% of the time. I renamed the phone the Blackberry Bitch because she just did not understand me. Usually after the fourth attempt to call someone, I wanted to chuck it across the room. I adapted and found that if you kind of speak in a computer like voice that mimics the voice on the Blackberry it can understand you. I was sure it was saying, “Oh yes, you are kindred, and now I can tell what you are saying.” That served me well for a few months before I got a new phone.

I also broke up fights between my family members, arranged a schedule so that someone was with me most of the time, and spoke to some close friends. I realized I could still get a lot accomplished while in a hospital bed.

It may have been the steroids; they make you super-human, or at least I am convinced of that. Lots of other things happened during those five days, some which I remember clearly and some I do not.

Honestly, like the days of constipation and the remedies, I just don’t want to recount.

But I will.

~

I was in the hospital for 2 days until someone finally got me my clothes and a nightgown and toiletries. The nurse seemed somewhat baffled when I said I did not have any of my toiletries with me yet, so she handed me a standard hospital issue baggie of personal care items. At least I could brush my teeth. 

In that really confortable hospital bed, where I was trapped by the IV lines going in and out, no one thought to hold me or lie down next to me. I am not even sure my family touched me much except for the stroking of my hair or a gentle pat or hug.

I must not have realized no one had really touched me or comforted me until the third day after the accident when my ex-boyfriend showed up and the first thing he did was say, “Move over,” and climbed in the bed with me and held me. I had needed that but not known how much until that moment.

I am not sure why no one in my immediate family could do that for me, but the reality was they couldn’t. Maybe it was out of fear or shock or their general inability to focus on someone that is not them.

You would think that it could be about me, in that moment, in that crisis, in that hospital room. But, again, it was not about me, it was about them.

There were fights in my room, loud yelling between my mother and sister about who was going to do what when it came to managing my daughter’s schedule and someone being with me at the hospital. And, interestingly and most importantly, about work-- how work, their work, was going to get done. There were computers and phone calls and business going on in my room all the time and it was jarring.

My sister stormed out after a few days because there needed to be melodrama and she was not the focus of attention.

On the fight days, the cursing and screaming was so loud and so foul that the nurses kicked them out of my room. I think even the dementia patients and the half-dead people heard the commotion.

Even though I could not see, I could tell through my talks with the residents and their comments that they thought my family was a little nuts or unhinged in some way. Or maybe I just said my family is a little nuts and don’t do well under stress.

~

There were times I was left alone in the hospital. My family knew my ex-boyfriend had to leave early in the morning, but no one came after he left. After a few hours of trying to amuse myself in darkness with nothing to do, a nearly impossible task, I started the phone calls which amounted to “Where are you?” and “I am hungry.”

In those hours I also had to use the bathroom. I was hooked up to IV’s, could not see, and therefore usually needed a little assistance. I hit the call button several times with no response.  I got angrier and angrier because I felt helpless and finally I got up and managed to start grabbing the cords to unplug the IV’s, felt my way around the room, IV stand and cords in tow, made it to the door, flung it open wide and began yelling that I needed help and needed it now.

I yelled in frustration at the top of my lungs, but I could hear no movement or sense that anyone was in the hall. So I kept yelling for about five minutes until a nurse came. She seemed annoyed I was yelling, but I was more annoyed they could not respond to a call button. That was when she realized I was blind.

They promptly put the bed alarm on me and a sign above my bed, which I could not see but assumed it said something like, “Patient no be able to see good.”

It took all that yelling (finally mine) on the fourth day to get shit straight. It was my first taste of how slack systems would be and how hard I was going to have to fight and yell and scream to get the help I needed.

~

After they took me off steroids, my gastrointestinal system shut down and the mood fluctuations began. This is when I realized the power of steroids. They ramp up your body and kind of make you feel like a superhero, impervious to pain and creating a false sense of reality where you think, “Hey, this is not so bad.”

But it is an illusion. And when the steroids are taken away you not only crash, you begin to feel how your body really feels. More importantly, you realize how you really emotionally feel, after having a traumatic accident.

And you feel like total shit. That is the best way to describe it.

I asked for more steroids, but once again, I had been given the maximum dose (for a human) and they cut me off. I think this time I was drug seeking.

So, steroid-free on the fourth night in the hospital, what I now call a really-bad-night, all the fear and anger and the realization of what had happened hit and hit hard. It was like the world of fantasy I was living in with my steroid-washed brain and super-hero cape shattered into shards of jagged glass pieces that were my reality.

And it cut deep.

In the dark that night and in my darkness came an unraveling and an untethering from the earth and in a way, I lost myself and my way.

I kept asking my family to not let me die. Even though I was not dying, something was dying inside me or maybe the old me was dying. Somewhat like a vampire story where you are being turned and your human self is dying off.

Or maybe I felt like I wanted to die. I willed it, I wished it, and I somehow thought if I gave in to the fear I would just leave the earth.

Finally, in my darkness, I felt disconnected from that hospital room, from the world. I no longer felt part of it nor an observer, but the observed. It did not feel good.

I spent most of that night somehow trying to escape that room by locking myself in the bathroom, curled up in the fetal position, cold tile carrying the weight of my body. And as in Pulp Fiction, the bathroom scene means something bad is going to happen.

The one thing that kept me tethered that night was the fact I had to be a parent to my daughter. I was still a mother and that sense of mothering and unconditional love for my child is what brought me back.

What also kept me tethered was that I began to pray, and pray really intently, for the first time since the accident. I prayed for strength, for vision (not sight), for the ability to care for my child, for God to save me. And I prayed, like I had in the past in moments of illness or distress, that God be near me and with me. And in that moment of deep prayer came a calm and a realization I had to get through this part to get to the next. I realized that my life as before was over, and more importantly, that I had the strength and grace to transition.

And the bad night was over.

~

The baby-doctors (they prefer to be called residents), constantly popped in and out of my room to look at my eyes. I had sustained a level of blunt force trauma and retinal cell death (called commotio), which they had never seen before.

I was in a teaching hospital and this was a teachable moment. I was glad to be of service.

I also learned some things about residents during my stay. For example, length matters. The longer the coat, the more time in residency, so the short coats can be mostly ignored. They are continually sleep deprived and are constantly writing notes, which means there are probably mistakes and typos being made. I also discovered that the residents, at least the men, are all married. They get scooped up quickly in medical school and probably have wives way too hot for them.

And they don’t correct you when you get their name wrong or seem to mind bawdy jokes. I called my two main residents the Budman and Jackoff for days until Jackoff says, “My name is Dr. Jack.” I really thought he said Jackoff, really I did.

My main resident baby doc who also had the first name of my recent boyfriend (which I could not decide was good or bad, just familiar) was really amused when he pulled a splinter of wood out of one of my eyes. I think he even slipped and said, “Cool.”

They also wanted me to bring in the bands of terror that did this to ne and took pictures of them at all angles. I suggested we get me in the picture and all pose around the bands. Good times.

In the hospital surrounded by family and nurses and doctors coming and going, talking and not talking, I sought the truth about how bad the damage was to my eyes.

What I learned is that if you don’t ask, they don’t tell. I also learned that my family is really terrible at asking questions. It was puzzling to me that even the nurses had no clue what had happened to me. They just knew to hang bags and put stuff in my eyes. And they did not even seem to get the sense that I really was in pain, because some of the nurses were really rough, grabbing at my bruised eyes to put in the drops.

One nurse missed my eyes completely with the drops so my eyes caked up and she could not get them open. Then she threatened to cut off my eyelashes. I faintly remember telling her to get out of my room and the next day I told the floor manager she was not to be my nurse again.

The nurses did not even know I could not see and they were late with meds and failed to respond to most calls. This was partly due to complacency from being on the waiting-to-die floor. I really hope that it would not have happened on an acute care or trauma floor where people actually understand you are in pain.

Every single day, when they came in the morning to write the nurses’ names and numbers on some dry erase board, I told them, “I cannot see that board.” Not even this clued them in that maybe I was kind of blind.

Even in the hospital I must have been faking it well, or functioning too well to be in pain or blind. This would become a recurring theme.

~

After dealing with many doctors, I realized that they were trying to give me subtle hints that I was screwed.  

My one main resident in the hospital kept saying, “This is a very, very, very bad accident and you’ve sustained a very, very, very bad injury and I’m so, so sorry this has happened to you.”

This was his attempt at bedside manner, which I appreciated. But it was also kind of like saying, “You’re screwed lady,” which I didn’t realize until later that this is what “You have a very, very, very bad injury” means. I thought he was trying to be nice.

~

The cornea specialist came into the hospital and said that any surgery on my damaged corneas, iris, or pupil would be purely cosmetic.  I should have at least questioned that. “Gee, those are important parts of the eye. Why would it be cosmetic elective surgery?”

But I did not ask.

Later I understood this was code for the fact that if your retinas are damaged, it doesn’t matter how the other parts of your eyes are functioning. And, of course, that was the case.

I didn’t know enough about the retinas at that point, so I just nodded my head and said, “Oh, that’s good, they can fix my cornea and my iris so I look normal.”  But what I wasn’t hearing was that it was cosmetic because it’s not going to help you see. 

I hadn’t taken biology in a long time and I didn’t have How the Eye Works for Dummies. 

~

I especially liked the doctors who would use all this medical jargon and then say, “Wow, you really whacked the heck out of your eyes!”

Or even better: “This is a real bummer.”

It was true, it was a real bummer, and I did whack the heck out of my eyes, but it’s funny to hear doctors talk like that. Those are definite signs that you are screwed.

~

I saw all the ophthalmology attending physicians in that hospital, sometimes more than once. They all wanted to look at the freak-accident-girl’s eyes. I had one who gave me some crazy-best-case-scenario, which involved my getting back 20/60 vision in one eye.

Right after that attending left the room, my resident said, “Don’t listen to that, he is guessing and with the amount of blood and trauma to your eyes, that is not a likely scenario.”

He was awesome to do that because the best case scenarios give you false hope and hell, given the fact that I had a one-in-a million freak accident, I was pretty sure I wasn’t coming out with the best case scenario. 

There were doctors who treated me as if, because I lost my sight, I must have also lost my brain, so I would not understand what was happening or I probably just did not want to know right now.

Pat, pat, pat. “I think this is the curse of macular degeneration.”

These eye docs are used to dealing with older people who really don’t ask a lot of questions or want to know what is happening in full medical terminology. It’s more like, “Just give me my shot that I have no clue why I am getting.” That is the mood in the mac degeneration mills.

But in general they are surprised you are asking so many questions and you don’t even want the answers dummied down at all.  

I never really got answers in the hospital except from my resident who just said, “There is too much blood in the field and we can’t tell, but it's not going to be good.” Thank God for that cute young Jewish boy (married, unfortunately) because he was new and fresh enough to be able to say, “We do not know.”

The attendings would not say that. But I needed to know so I knew what I would face in the future. It took me three doctors and three months post-hospital to get there, to that place of uncertainty and truth.

Finally, a retinal specialist told me straight that my ability to see, long term, wasn’t going to get much better. “It is what it is,” he said. But by that time, I already knew that. I had gone back into my world to mix with the sighted.

July 10, 2013-Volume 87: About the Dying and the Loving

The Adventures of the Blind/Low Vision/Visually Impaired (BLOVI) Girl: Volume 87: About the Dying and the Loving

In this last month I have experienced the processes of dying and of loving. What I have found is that the work of both is the same.  That work is the letting go of fear, the forgiving and the moving forward. In the process of my grandmother’s death I played the role of family member, of observer, of external, a supporter in the process of dying. In the role of loving I am the participant, figuring out how to be in relationship with another. What I have learned about loving and leaving and how I plan on growing as a result of both is the focus of this blog.

My grandmother died about a month ago and she fought death in the end. Fought like an 80-pound pugilist with the tenacity of her immigrant ancestry. She fought when she needed to give in, while her limbs turned blue, her lungs filled with fluid and her heart beat slower and slower. She knew she was dying and she was afraid. She called out to her husband and her parents to help her as she floated in that world between life and death. The hospice workers told us, the family, to start telling her it was OK to die and that all was forgiven and everything was alright. I worked with my Reiki master to help me find the words my grandmother needed to hear to be released. I could do that one thing. I could speak those words.

She would not let go, not move forward. And in the end as her body shut down and the pain and suffocating started, it was imperative that her soul leave its physical form. A form now failing, a painful trap, an unwilling life partner. So every day, a few times a day, I began to say the words. I said words of forgiveness, of letting go of fear and of moving on. I gave her permission to leave, said it was time for her to go to God and be with her loved ones and they were waiting for her. I said that all was forgiven ad there was no pain. I said that she was loved and that we would be OK. I said where she was going would be peaceful and beautiful. I made it a promised land so she would cross into it. I said there is nothing to fear, all is well and all is forgiven over and over again. I said the words love and let go over and over again. The first time I said them I curled up in a ball and did the ugly cry. The second time I cried silently while I said the words. And by the third time I was powerful in the message. Because I was letting go of my fear, embracing my grief and moving forward with my letting go of her.

The first time I said the words she responded as best she could and formed the words “I love you.” The second time there was silence, but I knew she was listening. Then the third time and times after there was the shallow rapid breathing that is the body beginning to die. And the last time I spoke the words what I heard was the most horrible sound I have ever heard; the death rattle. That sound. The fluid in the lungs deep guttural mucus filled sound that precedes the dying. A sound that sounds painful but is actually the absence of pain and of consciousness, the last stages before the physical body dies. That sound changes you.

In the dying I learned everyone experiences death differently, everyone reacts differently. And all those reactions are legitimate and OK. My reaction was relief, rejoicing and the realization I do not fear death. I am sound and firm in my belief that we are spiritual beings on a human journey and that the body is our vessel for one part of that journey. The next part is equally and maybe even more wondrous. And to get there, to move to that place, is to be able to let go of fear, to let go of the past, your past self, your shell, and to forgive. It is forgiveness, the forgiving of both others and of who and what we were that really frees us to leave this plane and go on to the next. And what I know, with certainty, is when the time comes for me, I can do that.

In the past month I have also been in a process of loving, of trying to build a relationship. And in that process I am learning that forgiveness, letting go of fear and the ability to step forward are, as with dying, the things that allow you to love. Love is something I have written about quite a bit. In my book I call the chapter on love, “They say that love is blind, but what if you are too?”  My track record in relationships is not one to model. Me, in romantic relationships, as a partner, is a work in progress.

The forgiving I have to do is forgiving myself for all the past mistakes I have made, but also for forgetting myself. What this means is that when I am in a romantic relationship I tend to lose a part of my focus, of my energy and sometimes I give up little pieces of me. I forget, sometimes, to ask the question of am I getting what I want and in the end your fulfillment is why you are in relationship. But in my role as giver and healer, I continue the asking of are you Ok in this, or with this or hell, with me. And that, as I have now discovered is because I lead with my masculine energy and I don’t trust my feminine self. And she is who shows up in romantic relationships.

All that has made me successful feels masculine and I look to that energy to compete in the world. I tend to date guys who are in touch with their feminine side. I have dated several guys who turned out to be gay or bisexual or wore makeup of who were just straight up momma’s boys. So, in past relationships I have been the male in some respects. I am cut off from my feminine side when I get into a relationship because I don’t really like or know that side of me. And maybe I see the feminine as weak and vulnerable. And embracing that vulnerability is now part of my work in figuring out how to be my feminine self without being the labels I have put on that side--weak doormat or evil temptress. And I call myself a feminist, shame on me.

I have to forgive my own view of the feminine side of myself and the fact that my female models have not been the best. And I have to learn to be able to step forward by stepping into that role, letting down that wall and being in a place where I can be whole, courageous, and creative and still be in a relationship. Lastly I have to let go of the fear of being hurt. That almost instantaneous protective reaction that stems from childhood pain, from abandonment, and leads to the question of is this all worth it. In the end the growth that can happen, the work and healing that can be done in a relationship is always worth it. And that is what I am embracing, that I will let go of the fear of being hurt in order to try to be open to love. And it feels scary bad at first, but is beginning to feel scary good.

In loving, in living and in dying the lessons to be learned are to let go of fear, to step forward and to forgive. Words so easy to say, so easy to think about, but so hard to do. It is our constant work; my constant work. I think about the years of growing it has taken to just identify the fears, know what I have to forgive and know what and how I put up the barricades that keep me from stepping forward. But I have done that work, that heavy lifting.

So now, in my middle age, in my grown up adult relationship with a really masculine guy, I have another opportunity to heal. I finally have a vision of what it is supposed to look like, the work I am supposed to do, the things I am supposed to learn. Much of that work is in forgiving the parts of me that lead me to give away my power, are afraid of the feminine and feel not good enough. Then these aspects of me can be integrated into my larger Self, the bigger me that is whole, confident, creative and powerful. And I can see it and smell it and taste it. I will learn how to be the best parts of my feminine side and find models of the feminine as powerful. The Magdalene. If I get it right, when I get it right, I will do some healing for myself and even more healing for others. And in the end it will be in my last relationship, the one that lasts. Until the time when the process of dying brings everything full circle. In the leaving and the parting the circle of forgiving and letting go of fear and being able to move forward and into the beyond starts all over again.

Keep Moving Forward,

Beth (BLOVI) Medlock